Stephanie2

Well, I know it is a problem in autism. Also, I know some will claim that 90% of autism is actually lyme. But in the end I believe I either read it on the lyme forum or in "cure unknown" that lyme affects iron and magnesium levels, both of which are way low for me. I know there are many other markers, thyroid, etc.

I know what you mean about misleading her. I have been telling ds6 for so long that I am going to fix this. At this point I don't even want to say it anymore b/c I'm afraid he is starting to lose faith in me. I think he is starting to "get it" though. Last night, he asked for ibuprofen. He can now tell me that it is coming on even before I know for sure myself. How empowering for him to finally be able to understand that he has "tools" to help him get through a bad day. Keep on plugging she will see that you mean it when you beat this thing in the end. She will love you for fighting for her.

Come back and let us know how today is going. I know the dread you feel when they wake up in the morning in this state. I am sorry you had to go through that again. I have to say that every time I "lose" one of my boys, my biggest fear is "what if THIS TIME I can't get him back?". That's how I felt with the recent psycho rages with the orapred. It is so scary. I feel very confident you will get to the bottom of it. It just may take more time than you would like, as it is for most of us.

Oh, where, oh, where do I start? I have a dream that I am not so worn out by strep/pandas today that I am getting nothing accomplished. I have a dream that I could go back to the days of DINK, double-income, no kids! I have a dream that I could see my friends again, or heck even my siblings would be nice. I have a dream that I could go on vacation...WITHOUT kids, supplements, all the back-up meds in the world and gluten free food. I have a dream that I do not have to dispense 27 meds/supps per day per child and then clean at least 40 cups and syringes at the end of it all. I have a dream that I could go back to work and not be so broke. I have a dream that friends and family didn't think I have lost my mind. I have a dream that I could have my almost 3yo's "baby" dedication sometime soon! I have a dream that my almost 3yo could say more than one word at a time, AND that we could understand most of those one-word sentences I have a dream that I wasn't on a first-name basis with all 6 staff members at CVS and the staff at 3 compounding pharmacies. I have a dream that insurance would cover my phone consults, which tend to be 2-3 times per week! Speaking of insurance... I have a dream that insurance would cover supplements and IVIG. I have a dream that I could sleep alone in MY bed, beside my HUSBAND. I have a dream that I could sleep. I have a dream that my boys will grow out of pandas at puberty!!!!!!!

Wow, I'm "impressed", too!! What a way to put it! Did ya tell them, welcome to PANDAS?

I hear you, believe me there are times, and I'm still tempted to do it, when I am tempted to pull everything: supps, meds, diet, just so I can bring my boys to a "top neuro" or "psychologist" to get all the dx's we need to get some respect and support from our families. But the simple fact is that it would not be pretty, their immune systems would bottom out (which would probably help us get IVIG covered...hmmmm) and they would go completely psycho on us without clostridia/yeast/strep under control. DH and I have talked about doing this many times, but we will not put our boys through that just to prove to family that we know what we are doing. They can go stick it!! LOL! Now, proving to the docs is a whole nother concept that I completely agree with. Gotta do what you gotta do to get your daughter help.

So there you have it, I've been trying so hard to figure out if I should put the boys on augmentin (due to my sore throat, ds2's "cold" and increased pandas symptoms in both boys). Luckily I did fill it during the day b/c when my in-laws dropped off ds2 last night he went completely nuts the second they came through the door. They were shocked, jaws dropped, etc. They tried to get him under control for me, and I let them just so they could see "you can't control pandas, my friends". Plus his sep anxiety was so high he only wanted to be held by me. I told them he had strep and you could tell they did not believe me. They watched me start his antibiotic and I told them (big knock on wood here) with the utmost of confidence in my voice "he will be a different child when you see him again on Thursday". They do not believe me, they are baffled, they started lecturing me about needing to find a "top neurologist" yada yada. They said he had been good all day with them, and now that he is home with me he is a mess. i told them that is how pandas works in my boys. They do not want to fall apart with others, only mommy and daddy. Further making me look "to blame" I suppose. But they will see on Thursday when they drop him off at my house again that he will not react that way and maybe they will then give me the slightest bit of respect for knowing what I am doing. Needless to say, pandas is 70% better today :-) and even ds6, who I did not think had strep yet, woke up better than I had seen him in a long time (he was slightly clingy and emotional last night so I started his augmentin, too).

Hi Amber, I was referring to naturals for strep, but I know what you mean, especially caprylic acid. I couldn´t agree more ! You´re amazing ! Thank you ! Ya know what is so awesome about you ladies thinking I am amazing? This is the only place where anyone thinks I am amazing!! Everyone in my life looks at me like I have 10 heads b/c our kids are so "out of control" and I am going down the wrong path, putting my kids health in danger with all the supps/meds, not going to all the right "top neurologists", yada yada. No one around me gets what we are doing and what we are going through and that we can no better control our children during pandas than we can control the sun coming up. I am so tired of being judged and looked at like a failure. I mean I could take the easy route and medicate my kids and maybe even institutionalize them and go on with my life, and the ironic thing is that then everyone would shake their heads and say, "you did all you could, you did all the right things, you tried, poor Stephanie and (husband)". But here I am banging my head against the wall to cure autism and pandas and I get nothing but grief and resistence. Wow! Big vent! Where did that come from? I know I am preaching to the choir.... So my point is, THANKS, I needed to hear that!

Have you checked for lyme? I have low iron and seem to be dependent on iron supps. I get restless legs if I miss for a few days.

You are too sweet! I'm not sure if it courageous as much as masochistic! But I gave it the ole college try...I know it has worked very well for others.

Good point. Not to mention h1n1 is going around...

Just sayin'... I've tried OLE, which worked great for a few months. When that failed, I tried Oil of Oregano and here we are with strep again (on a rather high dose, too. I have been told that I need to rotate, maybe I am not rotating often enough. But for now I think we are taking a break from naturals...hasn't worked any better than prophylactic azith. Azith is much easier to dose so we're going back!! BTW, next stop...homeopathy, but not any time soon.

OK, I got the confirmation I needed tonight. DS2 went into exorcist pandas mode, he only gets this bad with an actual strep infection. I started augmentin right away and I decided that I am not going to sit around waiting for the other shoe to drop. I am going to start augmentin for my 6yo in the next few minutes (he's already asleep, but I'll syringe it into his mouth). Browneyesmom, I don't know if this is an ongoing infection that we can't kick or if this is 3 separate infections, but we (all three of us) have had it 3 times since Sept. I'm not sure what needs to be done to clear it, but I'm thinking maybe at least a month of abx, and not the usual 2 weeks. Although, the boys do get it every january so maybe this is a new infection. Oh, and yes they are taking probiotics twice a day (750 billion!) away from abx. We still get the gut infections I hope I caught it early enough so that the inflammation didn't get out of hand. He just got done with a successful steroid burst, and ds6 is in the middle of tapering. Would you add another steroid burst for ds2? I'm in the mood to drop bombs here. I know the collateral damage is not pretty but nothings harder to get rid of than pandas.

OK, I have decided to start augmentin for my 2yo, who is showing not only signs of strep but of pandas. Duh...not sure why that decision was so hard. But ds6, I need more opinions for this one. He is halfway through a steroid taper, which would mask whether or not he has strep. I am leaning toward waiting to see if more symptoms flare. Yesterday he had the mildest throat-clearing tic that increased, but today not so much. Maybe by treating ds2 and myself I can spare treating him. Here's the thing, this child gets strep EVERY late Jan. OK, maybe I should just start his augmentin tonight... I am talking to our biomed doc tomorrow, I have a feeling he will tell me to treat everyone.

Oh my goodness, Vicki! Yes, I feel like I am drowning (and I told DH 2011 was going to be better than 2010)! As the day goes on I am leaning toward augmentin all around in my house.

My boys are treated with spironolactone and LDN (low dose naltrexone) which have immune-modulating properties. I think this is not a standard practice amongst the "pandas specialists" but our biomed docs got us involved with this. It has helped with the day to day flares, but they still flare with they get strep. Not sure if anything, even IVIG, is a match for strep.

My boys just got over strep from dec (had to do augmentin then a burst for one child and still doing a taper for another). Oh, I had it back then, too. Augmentin did not kill it for me so then I moved on to OLE and GSE combination which helped. Yesterday, I woke up with a sore throat and body aches (ds2 has had a cold, so thought that was what was coming on). By the end of the day my throat was beyond raw, hurt to swallow, talk, eat. Only other symptoms was body aches, no runny nose, no cough, no congestion. With it being a high strep month I decided to be rediculously pro-active and start myself on a z-pak last night. By this morning, my throat was 95% better and body aches are gone. Judging from past history, this never would have happened without the z-pak. Here is my concern. My 6yo's tics kicked up a bit yesterday which was very concerning b/c this taper has been taking care of that and the side-effects from the taper have been excrutiating. Also, my 2yo's OCD flared quite a bit. Had to manage with ibuprofen. Is the writing on the wall, here? Do you think that by treating myself as quickly as I did, I have prevented them from getting infected or do you think I need to throw some azith or augmentin at these boys (which may have some consequenses gut-wise). I have been using Oil of Oregano to prevent strep for the boys this month. This morning I added in some colloidal silver to the mix. I just wonder if it is enough. I will be devastated if these boys get strep so soon. What would you do?

That's exactly my thinking, Vickie. Only problem is we are going into the weekend! But I will not taper this weekend and will try to get in touch with someone on Monday just to confirm that I should taper as planned or slow it down. I am leaning toward slowing it down, but that depends on if anyone is willing to give me some more orapred, i don't think I have any extra.

So, I have been banging my head against the wall all day trying to wrap my mind around what the HECK is going on with my son!! I started to think that this was really starting to resemble a previous problem we had when we combined singulair and zyrtec. My son lost his mind for 2 months and I couldnt' understand what was wrong...we were in total crisis. I finally did a google search and found that the meds were probably the cause. I stopped the meds and voila...24 hours he was acting completely NORMAL!!!!! So, it just popped into my head to do a google search of orapred and cytochrome p470 system (liver enzyme pathway that clears out drugs...former drug rep here...don't throw tomatoes). Here is the link that popped up!!!!!!: http://www.webmd.com/drugs/drug-20260-Orapred+Oral.aspx?drugid=20260&drugname=Orapred+Oral&dmid=1503&dmtitle=SELECTED%20CORTICOSTEROIDS/ITRACONAZOLE;%20KETOCONAZOLE&intrtype=DRUG&pagenumber=9 Giving these two together can dramatically raise the level of orapred in the system. My son has been on ketoconozole (antifungal) for over a month. There ya go, I'm willing to bet my life on the fact that this has been our problem. And here I go adding on 2 more drugs: tenex and risperdal. I'm sure his liver is just lovin' it. I'm stopping keto in the morning, I'm also stopping risperdal and tenex and tapering the orapred. But now I have to wonder if I have to SLOW the taper down b/c it will be too dramatic of a drop! When do I get to take my detective hat off...I'm so tired!

I didn't know that it could be used as needed. I am seeing now that it can for rages, b/c if what you all are telling me is right, it seems to have knocked out the rages pretty quickly. He also seems more reasonable, but yes his personality is shot and he is tired. He came home and went to bed. I guess this one will be on our "as needed" list, b/c that's usually how we use psych meds anyway. It is much better than ativan from what I can tell. To be honest, usually nothing works as well as activated charcoal, but this time around I suspect there is more going on than just gut stuff.

DS6 woke up raging this morning, still wanting to put DS2 in jail and trying to get him out of the crib to beat him up (full story in the steroid post, in case you are really bored - LOL). We gave him risperdal for the first time and tenex, which we use from time to time. Within 30 minutes he was quite calm and we even sent him to school (with an email to the teacher and I went and talked to the nurse - broke down crying, aye yi yi). The teacher said he was tired, she had him put his head on the desk most of the day. When he came home he was quite reasonable with me, cooperative, tired, even started asking for his brother (who I have out of the house with a sitter to avoid the chaos). He then had a snack and crawled into bed and went to sleep (Halleluia!). I have been told that risperdal takes a couple weeks to kick in. Has anyone had a different experience than that?

I'll come back to this...too tired to think! OK, with this story first I was laughing, picturing your son looking at you like you had lost it! Then I was crying (I'm all over the place today) when you said your son crawled into your arms and bawled. I have been there and it is heartbreaking to see the helplessness they feel. laughing again! LOL!

OK, I have had quite a day and at this point may not even be able to coherently convey what I need from you ladies!! LOL! Thank you for all of your support. I am trying to make sense of what is going on. Can you just tell me about your experiences with the steroids? I can say this for sure, pandas is on the way out with this taper, so this ragey stuff that I mentioned in my last post is definitley not pandas. But it is pure psychosis, he has been having this reoccuring rage over the fact that he wants me to put my 2yo in jail. If I fight him on it he will rage for an hour. If I go along with it (meaning, say "ok, we will send ds2 to jail...we'll leave in a few minutes"), he calms down for a little while. Then he starts up again b/c we haven't called the cops yet and we haven't put him in jail yet. He actually called 911 when I was out of the room! I grabbed the phone and explained what was happening, I'm surprised they didn't show up at our door. When I hold him back from beating his brother he rages, when I hold him back from calling 911 he rages. This starts at 6 am and goes until he falls asleep at night, with a few lulls in between (thank God for those). When I describe this, does this sound like pure steroid side-effects? I mean I know it sounds obvious, like what else could it be? But it is very similar, but not identical, to when he gets klebsiella. But the kicker is that he is taking an antibiotic for klebsiella as we speak. So then I wonder if we have kicked up another bacteria (wouldn't be clostridia b/c he is taking vancomycin as well). I gave him activated charcoal and the first time it did seem to kick in and the second time it didn't. I know I am speaking a foreign language to some of you, sorry, it's so complicated in my house. Anyway, I was advised by my biomed doc to speed up the taper to get him off the steroid quicker. What are everyone's thoughts on that? I am one who likes to bite the bullet and do what is best long-term, which inclines me to not want to speed up the taper. Stick with it and get the maximum efficacy I can from it in terms of pandas. But I feel like our current situation is going to break dh, break me, etc. If the steriod has screwed up the gut (kicked up pathogens) then to me the damage is already done so why not just go full force with the steroid, kick pandas in the butt, then worry about cleaning up the gut later? I guess what I mainly want to know is, can a steroid really cause psychosis to this extent? I thought it only causes irritability/depression (which yes I am seeing along with all this).

Congratulations to your husband. I am so glad you didn't have to go to the ER. Regarding the steroid taper, can you slow it down? We slowed ours down by a ton. Most tapers reduce by 10mg. I recommend that as you get to lower doses reduce it by 5mg ending with cutting the tablet in half. The problem with steroids is that our bodies stop producing it when we take them. So we actually crash (for a few days) until our bodies are able to get production up again. Another problem, in regards to inflammation, is that for some people, the inflammation can come back stronger once the steroid is gone. A slower taper helps to keep it from coming back so fiercely. Hopefully, once things settle down you will receive the benefits. Sometimes I dream of putting mine back on a steroid burst with taper so, that I can have a few weeks of desperately needed rest. Gosh, what you say seems to make sense, things did escalate once we started tapering down. But what you are suggesting is opposite what our practitioner suggested to me today. He said to speed up the taper b/c it may be the steroid itself (or the effect it has on the gut) that is creating such havoc. I have to give this some thought, although I don't even have enough orapred to do what you are saying so I guess I don't have much of a choice. You both make sense, but I wonder in our case if it has to do with the steroid itself and getting off of it quickly is in our best interest. I do know this, what I am seeing is not a rebound of pandas. totally different. in fact, I can see pandas getting better everyday. Can you tell me how long it took to get efficacy from risperdal? I started it this morning (had some on hand), it almost seemed to work right away. Maybe it is just that it made him tired. You had me cracking up with this, which is a nice break from the tears I have had most of the last few days! To be honest, I have been working out like crazy in the past 6 weeks in order to mentally and physically handle this life (I have 2 of these pandas boys). I am in really great shape for the first time in years as a side effect!!

Yes, I would start some OLE right away. I use New Beginnings, 500mg, 3x/day. It eventually stopped working, but for about 8 weeks we were golden on that stuff. I am now using Oil of Oregano which seems to be helping and has helped tremendously in the past.